Courage and compassion; she cared for husband, others with ALS

EMERALD ISLE -- Kim Hebert didn't know when she married her husband, Randy, 13 years ago the journey they -- and their family -- would take.

It was that struggle -- and the courage and determination that came from it -- that helped her earn the 2006 Caregiver of the Year award.

Hebert, now 44, a retired Marine major once stationed at Cherry Point, became sick soon after returning home from the first Persian Gulf War in 1994. Following more than a year of tests, doctors determined he had ALS, more commonly known as Lou Gehrig's disease.

ALS attacks the nerve cells in the brain and spinal cord, causing loss of muscle control. The disease weakened Hebert's body from a run to a walk to a wheelchair. Today, he is totally dependent on a ventilator and uses a feeding tube, his wife said.

"He has no head control, no arm control. He's pretty much paralyzed," Mrs. Hebert said. He uses eye blinks to spell out the alphabet to communicate. "He lost his speech really slowly, gradually. I used to read his lips. When more people couldn't understand him, I could. You just adapt. You can read your husband better than somebody else could."

When his diagnosis was linked to his exposure to nerve gas while in the Gulf, Hebert was instrumental in a nationwide investigation to find out how many other veterans had the same affliction. On Dec. 10, 1996, with his wife at his side to translate, he testified before the Senate.

"They finalized it 10 years later, but then veterans were taken care of," she said. "They weren't taken lightly like they were before."

The couple had just started a family when Hebert became ill. Nicole, now 12, and Kyle, 11, have been incredible, their mother said.

"My daughter knows how to do pretty much everything with my husband -- we call her the little RN. And so does my son," she said.

But it is Mrs. Hebert's efforts that resulted in her being given the 2006 Caregiver of the Year Award recently by the Association for Home & Hospice Care. The annual award is given to a non-paid caregiver who goes above and beyond the call of duty to promote patient/client well-being.

Bobby Shoemake, director of operations for special programs and private duty nursing, nominated her for the honor. Hebert has been a client with 3HC for a decade, but Shoemake became acquainted with the case about three years ago.

Shoemake said Mrs. Hebert became not only an expert in her own husband's care, but worked tirelessly as an advocate for others. She has appeared on the PBS news show Frontline and in 2005, chaired the Walk to D'Feet ALS in Emerald Isle, which raised a state record of $156,000.

That was not the first fundraising effort Mrs. Hebert spearheaded.

Living close to the beach, she said that has always been a therapeutic place for her husband, even in his healthier days.

"When he started out not being able to get down the steps where we live to the beach, our neighbors used to carry him down, and I had two little toddlers," she said. "We would go to the beach access and all the neighbors would come up to the top of the stairway and carry him down for me, and at the end of the day would help me get him back up."

It became virtually impossible, though, when Hebert started losing the use of his legs, she said. Undaunted, she went to the town hall to ask about an undeveloped public access area.

"We had to raise the money and do all the legwork on it," she said.

Demonstrating their determination, the couple decided to raffle off their 1973 Corvette, a good exchange because he could no longer drive it, Mrs. Hebert said.

"It was more important to get to the beach than to drive," she explained.

The raffle raised money for the first handicap access, now called "Randy's Way."

She attributes her quality of life today to a steadfast faith.

"I think faith has a lot to do with the way that you perceive an illness. You have really got to have a strong faith in God that He's going to look after you and your family as long as you keep good faith," she said.

That does not mean there have not been struggles.

"I went for a couple of years, I'll be honest with you, mourning my husband's death because I knew it was going to happen," she said. "It didn't. He lived way beyond the expectancy."

At some point, she continued, "You have got to go on with life. You can't wait for death to happen. You can't live like that. You have got to have a positive attitude when you wake up and do things. We have not let the disease stop us."